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Late diagnosis at 12 years old

Posted by sparrow
23/09/20 12:01 PM


My daughter has only been diagnosed aged 12 despite me knowing something was up ever since she started school. She has mild to moderate sensorineural hearing loss combined with hyperacusi. As a result of such a late diagnosis she has suffered a lot and it has caused huge anxiety issues. it would help a great deal at this stage to read other stories of late diagnosis if anyone would be kind enough to share them? It always Helps not to feel alone! 

Posted by mummyof2
30/09/20 10:04 AM

Hi Sparrow, 

I saw your post and thought I'd comment. I often see posts from parents who have known about their child’s hearing loss from them being babies and see all the support they are given because of this, which filled me with hope. 

My daughter however wasn't diagnosed until she was 6 and even this feels 'late'. My daughter has moderate bilateral sensorineural hearing loss but it tends to be on the lower frequencies which is why it wasn't picked up sooner. I think as a parent you want to know prognosis- will it get worse and what support can be given from the audiology team and the school. It is also incredibly hard because I don't have a concept of what she does and doesn't hear so I am constantly worrying that she’s not picking up information like her peers, because we find she is very good at masking her hearing loss. 

In relation to prognosis, the audiology team can't give one all they can do is monitor her hearing but I hope once were seen by a consultant we may get an understanding of why she has this hearing loss because children often ask why am I different, why can't I hear like other children. I also feel it'd be nice to know if it is genetic or was it potentially a virus. 

In relation to support the audiology team have been fantastic, my daughter has hearing aids and has gotten used to them, they are incredibly itchy! Sometimes she needs a break because there is a noise overload at school. She was really self-conscious of them at first, but we've been really positive, because essentially, they are no different than the need to wear glasses. I did see on another post though an older child attending school was given smaller hearing aids, therefore they were more discrete. 

Lastly the school have been great but the support from the local council in providing sensory support (teacher of the deaf etc) has been awful! My daughter has had her hearing aids for about a year and no matter how much the school, audiologist or myself chase them they have not sent sensory support. This is important because they will assess the environment your child is in and make recommendations, it was thought that maybe a radio aid might help my daughter because it'll hone the teachers voice through all the noise- and there is a lot!  

How has your experience been so far? How are you and your daughter feeling about this, are you relived to finally have an understanding of your suspicion? 

Posted by sparrow
30/09/20 10:44 AM

Thank you so much for sharing! It really does help to hear other stories - especially given the similarities. So far I have found it was a bit of a battle to get some individual teachers to recognise how hard it has been (and still is) for my daughter - however I've now e-mailed everyone and only one is not adapting yet Which is a big relief. The school Senco is also being fantastic. 

tiredness and overload are definitely proving an issue but the school are letting her sitting stuff out when it gets too much which is great. I know what you mean in terms of what she's hearing or not hearing. I've realised the worst subject is maths so alongside her teacher I'm doing little bits of extra at home to support using visual methods but she's clearly very behind. 

knowing is definitely a massive relief - I knew something was going on but because she's obviously had it from birth she knew no different and didn't even realise how well she lipreads! 

one of the hardest things recently has been grandparents saying things like "well she's not deaf" and making me feel as if I've created a problem where there isn't one which is so hurtful and insensitive- i showed them the audiologists report but sadly they refuse to listen. I think they don't want their grandchildren to have issues (my son is also being tested this week) but it's not very supportive given all the struggles my daughter clearly had as a result of not being diagnosed. 

on the plus side we are learning sign (just occasignal words like bag, bed, teeth etc for daily tasks and school mornings and bedtime routines which we've found really helps as it takes the pressure off her when she's tired or sleepy. 

so in all it's so good to know and during this period of adjustment it's really lovely to know we are not the only ones - so thank you x

Posted by ellie’smum
10/11/20 04:59 PM

Hi Sparrow

i hope you and your daughter are well.  I'm a mum of a now 18 year old daughter who like your daughter had a late diagnosis at 12, and was in year 7.  She has a severe bilateral sensorineural hearing loss.  We struggled at first, and I felt terrible as her mum and that we had missed it, although it was me in the end that asked for her to be referred. 

It was a huge learning curve for her, us as a family and school.  We eventually applied for an EHCP in year 10, much to late for school but it's been a life saver at college.  She now has a scribe, who takes all her notes so she can now concentrate on listening to the teacher as well as lipread.  Her confidence has grown in the classroom, although she's still very shy, and she's getting some fabulous results.  She is also entitled to the extra exam time.

Her SENCO at school were brilliant, as is her audiologist, we are so sad to be moving to the adult unit in the next 6 months.  Her TOD not so good, we like the poster above (mummyof2) had to fight for a radio aid and then a roger pen, but they have been a life saver, well worth the fight.  As I said before college have been brilliant, her Scribe supports her both with the note taking, as well as being there to support her mental healt.

Apart from finding out so late, my biggest regret  is not applying for the EHCP sooner.


Posted by sparrow
11/11/20 02:48 PM

Thank you so much for posting. That is so useful to understand how important the EHCP is and we will definately apply for one as soon as possible. First she needs another assessment then once we have more clarity about the way forward we'll apply. 

currently she is under huge pressure as her school have chosen to use face masks in the classroom as well as the corridors! we managed to get some clear ones for teachers but it's proving tough for my daughter - it's hard enough to discover you have hearing issues!  Then just as you understand everyone covers their face! 

If you don't mind me asking does your daughter have any words of encouragement she could give mine as it sounds like mine is going through the same thing? 

thsnk you so much - it really does help to know we are not the only ones